Just wanted to let you know I am almost one year post-op from having a neobladder performed at Johns Hopkins in Baltimore. I have a very long story that you should be able to find if you go to invasive bladder cancer and go to page 2, look for T4aNo and read. I am so happy I got a neobladder even though I have had some problems. It is working pretty good now through out the day and at night I wake up every three to four hours to go to the BR. I went in the surgery knowing I might have to cath my self for the rest of my life but I took the chance. I said I would leave it in God's hands what ever happen was meant to happen. I never thought I would leak which I did. The stats I was told and read about neobladders working was, 60% of the time they work and the other 25% you have to cath yourself and 15% you leak. So all I can say it has been along road but I am very happy with my decision to have a neobladder. If you have any questions please feel free to contact me.
thanks wendy...what an informative article...i'll have to look up the other institutes which perform the surgery and specifically on women and cystectomy. I remember when i was doing my research only one name came up in laproscopic bladder cystectomy and though he had not done a zillion of these he was head of the transplant division at the Cleveland Clinic(which is #1 in Urology in the country) and in surgery 4 days a week. I had total confidence in him. In the room with me was also a laproscopic gyn who did the hysterectomy part...my surgery took 4 hrs l5 mins and i had 3 1" cuts and one about 2 l/2" where the new bladder went in.....still felt like i'd been run over by a truck but was out of the hospital in 5 days.
I've noticed since that all of the major cancer hospitals and other hospitals are adding much to the chagrin of the traditional cut and sew sugeons laproscopic divisions. Its about time. So don't worry about your kids playing those video games for hours on end...they'll make great surgeons!!!
Pat and Holly - Thank you both so much for your info. Now I know better who the successful MZ is. WOW ! Now I have some opportunities I would not even have known to examine....something less invasive with a shorter surgery time always sounds better to me so I will keep those ideas in mind, although the idea of having to travel doesn't thrill me, moreso as I am not sure who I could find to go with me. But I am a person of faith and if that is what God has in store for me, then I'm sure I will find a way.
More and more, the Indiana pouch seems less threathening to me and so I appreciate hearing the success stories. Thank you Pat for all the details. I plan to make a phonecall later today and talk with someone else about their experiences.
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright
Pat brings up a very big point my "chemo brain" wanted to address yet didn't. ...
I am located near the Illinois/Wisconsin border middle to Chicago and also Madison. I left our smaller community facilities to find the experience and expertise to do successfully what I needed to have done. I originally chose to have the neobladder done at the University of Wisconsin Madison Hospital by Dr Jason Gee. Although he was able to make me feel confident in his skill - the facility and supportive staff failed me repeatedly on lesser points. The surgery was going to take 7-9 hours as it was not robotic. After much encouragement to seek what I need, friends here (Bless every last one of you friends) I chose to go to Mayo's in Rochester Minnesota - a 5 hour drive in good weather. I would be in the hands of a surgeon who had an extensive history with RC and neobladders not only with men - but with women. It was worth it. I cannot encourage you enough to investigate the surgeon and the method without limiting yourself with distance. You can get through a few days at a hotel near the facility prior to getting home rather than learn how to live with a less than satifactory procedure for a long time. Thank you Pat for addressing such an important point. Love ya, Holly
PS One small fact I came to know since the day I had to decide... U of W Madison did NOT tell me I marginally failed the EKG in preop testing. Thatmay have been important in operitive survival had I been there. I discovered this after surgery in getting a full copy of my Mayo's records which included transferred records from other facilities.
Hey Holly and Melodie....just a note. I think one of the most important factors here in the neobladders for women is that you had it done robotically....i also had it done laproscopically and at the time i had the only surgeon in the world who did it that way...things have progressed in 4 years. With the robot and laproscopic procedure they have a much better view of the abdominal cavity...i mean its on a big screen enlarged 4X what the eye can see...i think that makes for more of a success in doing the neobladders in women with our little short urethras. I'm not sure how many surgeons are doing this ... but if it were me and i was doing it all over again i surely would look for the surgeon who uses the robot. The conventional surgeons will pooh poo it.....those guys are really competitive with one another. So Melodie don't be afraid to travel to have the surgery done...you can find a urologist to follow up in your home city. Where you go and who does the surgery is most important. Pat